Keeta
03-30-2006, 08:51 PM
I am new at all this so please forgive me if I ramble on. I was dx 15 yrs. ago w/ fibromyalgia & restless leg syndrome. As w/ so many others I have been thru the gammet of doctors, meds, tx's and suffering. But a couple of yrs. ago some new symtoms started appearing (intolerance to heat, unsteady gait,(I had to start using a cane due to occasional falling),intermittent blurred vision, dizziness,severe muscle spasms & spasticity,numbness & tingling in both feet and legs, forgetfulness. severe fatigue) all of which have
continued or gotten worse. My rheum. finally suggested I see a neuro, so last week I had the appointment. He didn't suggest any possibilities but did order an MRI -- w/ & w/out contrast. Today I received a call from his office that everything was normal. I guess I am stunned.On the one hand I am thanking God that the results were normal, on the other I am totally baffled & frustrated. I certainly don't want to be dx w/ ms but it's the only thing that makes sense. How can the MRI be ok when I know I'm not ok? Where do I go from here? I have reached a point where I am barely able to get through the day (fatigue, pain,and all the other symtoms already mentioned). Like all of you, over time I have had to adjust and make changes to my life in order to have "some kind of life". I guess I just don't know what to do now. I feel so alone with this. My husband and I are both Nurses (I am retired) and just feel certain that this is MS. Forgive me for sounding so pitiful.... I would appreciate any suggestions or comments asap ... I am very discouraged.
continued or gotten worse. My rheum. finally suggested I see a neuro, so last week I had the appointment. He didn't suggest any possibilities but did order an MRI -- w/ & w/out contrast. Today I received a call from his office that everything was normal. I guess I am stunned.On the one hand I am thanking God that the results were normal, on the other I am totally baffled & frustrated. I certainly don't want to be dx w/ ms but it's the only thing that makes sense. How can the MRI be ok when I know I'm not ok? Where do I go from here? I have reached a point where I am barely able to get through the day (fatigue, pain,and all the other symtoms already mentioned). Like all of you, over time I have had to adjust and make changes to my life in order to have "some kind of life". I guess I just don't know what to do now. I feel so alone with this. My husband and I are both Nurses (I am retired) and just feel certain that this is MS. Forgive me for sounding so pitiful.... I would appreciate any suggestions or comments asap ... I am very discouraged.
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rhondabuzz
03-30-2006, 11:07 PM
Hi Keeta
I'm so sorry u'r goin thru all this..and that it's been so long without a dx. I'm only about 5 wks into this myself so i know i can't offer anything here in the way of knowledge...but i do offer u my support. U know u'r body and symptoms so much better than anyone else. Even tho u'r not dx...u still have to live with it. I too have many of the symptoms u described and have found myself feeling lost and scared. I can only tell u that everyone tells me it takes a long time...a very long time for some as u know much better than i. U'r not alone no matter the dx...and i will keep u on my heart and in my prayers daily. Hang in there and take care of u'rself. We're all here for u.
rhonda
I'm so sorry u'r goin thru all this..and that it's been so long without a dx. I'm only about 5 wks into this myself so i know i can't offer anything here in the way of knowledge...but i do offer u my support. U know u'r body and symptoms so much better than anyone else. Even tho u'r not dx...u still have to live with it. I too have many of the symptoms u described and have found myself feeling lost and scared. I can only tell u that everyone tells me it takes a long time...a very long time for some as u know much better than i. U'r not alone no matter the dx...and i will keep u on my heart and in my prayers daily. Hang in there and take care of u'rself. We're all here for u.
rhonda
lilc
03-31-2006, 09:16 AM
Keeta, did the neruo say "nothing wrong" and send you on your way? I would think they would at least have ordered some additional tests, perhaps to check for lyme and some other things that mimic MS. Did you discuss ALL of your sx with the neuro? I know it is discouraging, but you have to keep pushing for answers. We are here for you!
Keeta
03-31-2006, 09:51 AM
I have a follow-up appointment w/ the neuro in May. He has not sent me on my way yet but am expecting he will do so. Yes, I did explain all my current sx with him on my first visit.He seems kind but didn't seem too impressed w/ my sx.
nyfl123
03-31-2006, 04:11 PM
There is nothing worse than KNOWING there is something wrong with you and the Doctors finding nothing. You start to feel like your insane when you leave the doctors office with a disappointed feeling when they tell you your results are fine!. I know how you feel. I guess I'm Lucky that I had a Dx in a year. But I think thats ONLY beacuse I had 7 lesions in my brian for definitive proof. I had one idiot Neuro not even bother with an MRI and just tell me all my symptoms were stress related. Has anyone done a spinal tap on you recently. I have a great Neuro now who is a memebr of of the MS Society, Opened the 1st MS clinic in South Florida and has told me that it is one of the hardest diseases to diagnosis. He also told me there are about 30 other diseases that will causes lesions in the brain. As hard and frustratung as it is you need to try to gather the strength to keep going from Doctor to Doctor till you find the right one. I went through 5. You are in my prayers.
Stephanie
Stephanie
duttin
03-31-2006, 10:35 PM
Keeta,
Keep strong,it's hard when your scared.I had went through 4 neurosurgeons(previous lumbar surgeries) at top clinics,symptoms not from that.I have been to 3 neurologist,not one looked at the actual MRI's. 4th neuro said brain atrophy,significant with ms.No lesions,some lesions can disappear in time.Lumbar Puncture,high elevation of myelin basic protein.(not used to determin MS anymore)but significant with demyelination seen in MS.Absolutly no reflex in rt ankle,diminished in rt elbow.Romberg sign positive.Antalgic gait.Still only probable MS.
Every possible neurological disorder has been ruled out.family DR. is pretty sure it is MS.He's been great the last 2 years.
I also have chronic muscle spasms and spasticity.I take 4 meds to control it.I am always of balance,muscle weakness,blurred and double vision,numbness,tingling,plus a host of more.I have lost my vision twice now.I'm tired of the pain its always at an 8 out of 10.Heat has been my worse enemy.My last attack was bad,I couldn't move my rt arm and leg.Each attack effects the rt side.My worst fear is I'm rt handed.
I stay busy and continue plugging away.I have a neuro appointment monday,it's been a while,if they don't schedule new MRI's I'm gonna blow.
Out of frustration today I called the Cleveland Clinic the MS Mellon Center I have an appointment in 3 weeks,no referral needed.I explained my past 2 year ordeal and fears and got in.I figured I'd have a 6 month waiting period.They have all my medical records I just seen a neuromuscular specialist there this month.I was shocked she didn't send me there.It was well worth seeing her though they ruled out ALS,Lupus,Lyme,Sarcadosis,Myopathy,Neuro pathy,B12 defficiency,thyroid,rheumatoid
arthrisis and skin sensory diseases.I do know what it is not.
Keep searching,get another opinion.I have found after 10 different DRs only a few actually listen.keep a journal of symptoms,get copies of all medical records.You know how you feel and first instincts are usually pretty good.It gets frustrating and down right discouraging.I use to go to bed ever night scared,now I get up every morning and ask what body part is not going to move.Its a new way of living and the residual effects each attack has left is here to stay.It took 2 years to get to this point.
Prayers to you
Toni
Keep strong,it's hard when your scared.I had went through 4 neurosurgeons(previous lumbar surgeries) at top clinics,symptoms not from that.I have been to 3 neurologist,not one looked at the actual MRI's. 4th neuro said brain atrophy,significant with ms.No lesions,some lesions can disappear in time.Lumbar Puncture,high elevation of myelin basic protein.(not used to determin MS anymore)but significant with demyelination seen in MS.Absolutly no reflex in rt ankle,diminished in rt elbow.Romberg sign positive.Antalgic gait.Still only probable MS.
Every possible neurological disorder has been ruled out.family DR. is pretty sure it is MS.He's been great the last 2 years.
I also have chronic muscle spasms and spasticity.I take 4 meds to control it.I am always of balance,muscle weakness,blurred and double vision,numbness,tingling,plus a host of more.I have lost my vision twice now.I'm tired of the pain its always at an 8 out of 10.Heat has been my worse enemy.My last attack was bad,I couldn't move my rt arm and leg.Each attack effects the rt side.My worst fear is I'm rt handed.
I stay busy and continue plugging away.I have a neuro appointment monday,it's been a while,if they don't schedule new MRI's I'm gonna blow.
Out of frustration today I called the Cleveland Clinic the MS Mellon Center I have an appointment in 3 weeks,no referral needed.I explained my past 2 year ordeal and fears and got in.I figured I'd have a 6 month waiting period.They have all my medical records I just seen a neuromuscular specialist there this month.I was shocked she didn't send me there.It was well worth seeing her though they ruled out ALS,Lupus,Lyme,Sarcadosis,Myopathy,Neuro pathy,B12 defficiency,thyroid,rheumatoid
arthrisis and skin sensory diseases.I do know what it is not.
Keep searching,get another opinion.I have found after 10 different DRs only a few actually listen.keep a journal of symptoms,get copies of all medical records.You know how you feel and first instincts are usually pretty good.It gets frustrating and down right discouraging.I use to go to bed ever night scared,now I get up every morning and ask what body part is not going to move.Its a new way of living and the residual effects each attack has left is here to stay.It took 2 years to get to this point.
Prayers to you
Toni